SIGN Language


I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.  

With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block.  It’s the “Big M” –  Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too.  And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.  

After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone.  I haven’t started the “Big M” quite yet.  I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran.  The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber.  Sure, as long as you can actually sleep.  Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.  

“People on Methyltrexate can be flare free for up to one and a half to two years.  That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet.  I nodded.  Sure.  One and a half to two years.  That’s good, right?  That’s good for a Lupie like me, right?  I had always convinced myself that I was one of the lucky ones…  just a mild case of Lupus, that’s all this was.  I’m fully realizing the extent of my denial.  How can it be mild when I had organ involvement from the very start?  I was never medicated properly.  To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain.  Me?  I thought properly medicated meant somewhat tolerable pain.  It had never occured to me that a person with Lupus could live without pain even if they were taking meds.  

“Take your time,” my rheumy nurse said reassuringly.  He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two.  Let’s make it pain-free.  Let’s work part-time.  Let’s make it MY TIME.

 Yes, please.

I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor.  The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital.  I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach.  Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator.  My brain fuzz clicked on, buzzing like a neon sign at dusk.  When I approached the unfamiliar receptionists, that’s when I saw it.  The white lettering on the floating, blue-green sign said:  NEUROSCIENCE.  Out of every unit in that hospital, Rheumatology was moved to Brain Central.  I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.

With one last glance at the sign, I navigated my way back to the elevator.  Almost immediately, I passed another unit to my right that I hadn’t noticed before:  


I smiled effortlessly this time.  Nice one, Universe.


My head is ablaze with a swarm of incessant fuzz.  Buzz buzz buzz.  I’m starting to think it’s a permanent part of my new biology.  

I can see my veins through my skin.  Thinning of the skin is a side effect of one of my meds… I can’t remember which.  I am see-through.  Transparent.   That’s okay.  I feel like that sometimes anyway.  

The body never lies to you… even when you ignore it and treat it like crap, it will never lie.  I get Lupus messages all the time, that stuff doesn’t surprise me.  It’s when you get the zings and zaps that go right through you, from some untraceable pit of your “stomach” to that part of your “heart” you keep tucked away under piles and piles of blankets and all that other crap you think will protect you – that surprises me.  It only lasts for a second and is usually triggered by a sight or a sound, a person, a memory or even a word.  In response, the body will give you the wake up call no one else is brave enough or insightful enough to tell you:  “You’re not over it, baby.”  Zing.

The Face and The Case of the Mysterious Brain Fuzz

It is after 2 am in the morning and once again, I am awake.

My brain is tingling, vibrating.  Ever since I left the hospital, there has been this “sensation” around my head, an invisible layer; a halo, that vibrates and travels the surface of my brain.  Sometimes it’s on the left, sometimes on both sides, sometimes just up top, but usually it’s at the back of my head.  It doesn’t hurt… it’s just there.  It’s “loud” enough to distract me, it interrupts my thoughts, it increases and decreases without warning and seemingly without reason.  I call it my “brain fuzz.”  It goes very well with my newly discovered forehead fuzz, don’t you think?  

Around 11 pm, while sitting at my computer, my brain fuzz increased dramatically, very quickly and without warning. At the same time, I felt this surge of energy come in and through my body.  Almost immediately I was moving faster, more erratic, my eyes became shifty, urgently looking everywhere, wanting to soak everything in.  I exclaimed to my dad, who was sitting beside me, “I have brain fuzz!”  He looked at me confused and said, “what does that mean?”  I told him I thought I was having a minor burst of manic energy, nothing serious, but it was surprising how sudden it came on.  He looked at me with concern and asked me if feeding me would get rid of it.  I laughed.  Oh, if only it were that simple.

I basically “sat back” and watched myself for the next few hours.  I am watching still as I sit here typing.  This is a new part of my recovery that I am experiencing.  After two months of navigating my way through very strong, extreme manic episodes, I am now experiencing mania on a completely different level in both frequency and power.  These bursts or I guess you could call them “mini-episodes” are shorter and are less intense, but still bring out a very powerful physical response in my body.  Since these mini-episodes are less intense and require less energy to control, I find that I am not only observing, but I am also able to analyze what is happening, something I couldn’t do before when my entire focus was just keeping “Chipper” or “Evil Elena” at bay.  

The solution for tonight was simple.  I focused my energy on a task.  I went through and organized my papers on my desk.  I updated my “mania journal” in my agenda.  I wrote out my schedule for the week for my parents.  I must have shuffled back and forth from my room to the office a million times.  I kept quiet.  Dad asked me if I needed to talk it out, which is something I did for the first month I was home, especially during breakfast.  My poor parents would never get a chance to finish any article they were trying to read in the paper.  I’d ask them question after question, running from my room to the kitchen in a constant “show and tell” as I flitted from one topic to another.  Quiet is better.  I could also see that dad was a little unnerved and worried about my sudden burst of energy, so I didn’t want to inflate the situation by talking non-stop.  I did find myself releasing some exclamatory remarks despite my efforts.  For example, when my mom came home I exclaimed very loudly, “I’m manic!”  It just slipped out.  

I wonder if the brain fuzz is some strange physical sensation produced by the toxic swill of drugs swirling through my veins or maybe that’s just what “tissue inflammation” feels like.  I wonder if people with bipolar hypermania have brain fuzz too.  What makes it feel more intense at times and at others not at all?  Will it ever go away?  I am also amazed that I haven’t had a headache in all this time.  Not one.  You’d think that I would have at least one, right? It’s strange to me that the inflammation in my brain has not yet translated itself into actual pain… no, it’s just this weird, warm and literally “fuzzy” feeling around my head.  Inflammation equals pain and lots of it – I know this from years of experience.  This doesn’t make sense at all.

So, my lovely readers, I would love to hear some of your thoughts on “The Case of the Mysterious Brain Fuzz” or on any of the other interesting brainisms I have posted here.  I’m Dr. House and you are part of my medical team, remember?  My little brain feels over-saturated these days.  It would be nice to hear someone else’s thoughts for a change.  I never really know if I am making any sense.

Oh, and chemo treatment #3 is on Thursday.  Hopefully, it will be my last…

And for something to look forward to, next time I will blog about my last neuroscience session:  Positive Psychology and The Power of Mindful Meditation.  No mad scientists this time, but the Psychology PhD who taught it unwilling became his own lab rat when he found himself diagnosed with a chronic, incurable illness and was completely paralyzed as a result.  He is now living, moving, breathing proof of what he used to teach to students for years, but never practiced.  Yes, all things continue to fascinate… and after two months at home and not working, I’d say that I’m more than thankful for that.  Very thankful, indeed.

Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

I am very “manic” today.  I would call it “chipper” but the 10 year old Elena didn’t show up today.  Nope.  Just the cranky, darkly explosive Elena.  She also cries a lot.  You wouldn’t like her.  I know I don’t.  It’s because I felt nauseous all day today, I guess.  I just didn’t have any energy in the reserves to hold her back.  Don’t worry, no puke, but I couldn’t eat very much either.  It was bringing back memories of the two months before I was admitted to the hospital for this thing.  Did I mention I lost a total of 21 pounds by the end of my hospital stay?  

Anyway, I was so tired today that I think I must have snapped at my beautiful, concerned parents about 50 times.  This one time I heard the footsteps of my mom in the hallway and I yelled out “I’m okay!!”  I scared her half to death.  She was probably just on her way to her room and not to mine at all.  Sigh.  I know I need to be home with them right now, but God, I wish that I still had my apartment on times like this; a place where I can hide away and protect my parents from being yelled at for nothing.  I won’t even go into my feelings about being a 28 year old woman living with her parents again, her newly retired parents who should be enjoying their lives.  

I try my best to be quiet on days like these.  I try to keep to myself, read, email.  I am finding that I need to do less emailing.  When I am feeling particularly manic or “hypercreative,” I end up writing long, intense emails to people.  Mostly to my favourite people, but sometimes to those I don’t know very well at all.  I think the latter is where I get myself in trouble and where I end up sounding as crazy as I feel these days.  Now these emails are always full of positive things and expressions of fondness and love, but I am sure the intensity of these emails are hard to receive, awkward even, for some and surely exhausting to interpret.  Great.  Just another way that I am hurting those around me.

When I say “crazy” I don’t mean to insult those who actually have bipolar hypermania.  If I have learned anything in this whole drama, it’s that mental illness is a powerful and horrible thing to have to live through, so much harder than what I have gone through physically with Lupus.  I only have to deal with the physical pain.  Ok, yes, all those with chronic illness also suffer through emotional trauma, but nothing like this.  The stigma, the guilt, the fear that comes out of having a disease in which you cannot control what you say or do, to never know what is to come out of you whether it be tears or screams or threats or joy.  To not know if you could potentially say or do something that would ruin the lives of those you hold dearest, to think that there is a possibility that you could physically harm them… to live with that in addition to knowing that the majority of the population think that you are doing these things on purpose.  That you’re not “trying hard enough” to stop doing and saying these things.  I have found myself thinking sadly of the mentally ill man who beheaded the young man on that Greyhound Bus not too long ago and of the young man’s mother.  How can anyone expect her to understand that the man did not want to do that.  That he is ill, that he was probably there watching inside his head, watching in horror as he did that horrible thing, helpless to do anything about it?  

All my days in the hospital and even now I am standing there too, in my mind, watching myself, trapped.  An outer body experience I guess you could call it, but I definitely feel like I’m still inside my head.  I watched everything, EVERYTHING, watched myself make an utter fool of myself, singing and talking nonstop and kicking walls and screaming and throwing things and threatening… I watched everything, everything except the moments when I left entirely.  Yes, there are whole days that I don’t remember because I literally left my body.  I guess I died.  Well, isn’t that what you call it when your conscious self leaves, when the only thing left is your outer shell?  The only difference is that she was still talking and screaming and throwing things.  But that wasn’t me.  I know it wasn’t.  Because I wasn’t there.  Now, if that isn’t the scariest thought ever, I don’t know what is.  But it wasn’t a thought people – it happened.

I came back of course, somehow.  I’d like to think it was the love of those around me that awakened me.  It sounds more beautiful that way.  The doctor folk will probably want to say that it was probably the mix of drugs that did it or something.  My brother says it was like I was on LSD, that I was on some psychedelic trip.  Perhaps I was.  At the current moment, I don’t really care.  What happened next was that I started to figure out how to control the different Elenas that sprung out of me from moment to moment.  It was slow, too slow for my liking, so I did have my share of outbursts, but I quickly learned that those outbursts would not get me out of that hospital room.  I forced myself to calm down, to be strategic in controlling my symptoms.  I figured out that one of my most obvious symptoms was talking nonstop, so I learned to be quiet and listen.  Eventually the doctors started to feel better because they were noticing that my behaviour was improving.  They started letting me out of my isolation room and eventually they released me, but they did it because they thought that the steroids were improving the inflammation in the brain.  When they decided to release me they hadn’t even given me the first dose of chemo yet.  And as I have established in my previous posts, my bipolar symptoms are largely unchanged at the moment because the chemo hasn’t kicked in yet.  They say it takes 6 – 12 weeks.  We’re on week four and a half, I think.  And yes, the steroids have been fabulous in eradicating my arthritic and costochondritis symptoms and giving me my appetite back.  I can’t even remember feeling this pain free for this long, but the memory loss, the bipolar mania symptoms, the OCD, the vision loss in my left eye, the brain “fuzz” sensation I feel around my head, the cognitive blips… they are still there.  And they were there when they sent me home.  I fooled them into thinking I was better.  I had to.  I knew I would never get better in there.  And they would never take my word for it alone.  They needed proof before they released me and through their scientific reasoning they must have reasoned that the steroids were finally doing a good job on the whole brain thing, or starting to anyway.  Or I could be wrong, who knows.  Maybe they could feel that I could deal with this at home now.  Maybe they believed in me instead. I think I’d like to choose that ending.  Did I mention that the steroids, in addition to making you an insomniac and a moon-faced freak, it also aggravates and brings out bipolar-like symptoms.  I think you’re starting to see that, I’ve got a lot of things working against me here.  And it’s not even the drugs that are the worst of it, it’s that essentially, I am in a battle with myself.  Constantly in battle with these distorted versions of myself.  I don’t even know which one is real anymore.  I don’t even know if a “normal” Elena exists.  Maybe she didn’t come back at all.

I had a moment of fear today that I am actually bipolar.  There is nothing in existence right now that can prove without a doubt that I have inflammation in my brain.  The prospect of knowing that I possess the actual mental illness, that I was not the lucky one who only has to deal with this for a short time, it was paralyzing.  And I still sit here paralyzed.  Paralyzed at the thought of it.  

I don’t think I’m that strong.